It takes a special heart and personality to be a full-time caregiver. Caregiving is a lifestyle. You watch people struggle to do things that others don’t even think twice about. Using the bathroom, taking a shower, getting dressed, eating, breathing.
WHAT SKILLS DOES A FULL-TIME CAREGIVER NEED?
A caregiver should,
- Be a patient, kind, loving person
- Be willing to do what is needed for their person, without complaining or making it seem like a big deal (even if it is)
For me, I am the full-time caregiver for my wife Candace. Candace suffers from multiple life-threatening auto-immune diseases that are at times super scary to be witness to.
THERE’S NO WAY TO KNOW WHAT YOU’RE GETTING INTO
I had no idea what it REALLY meant to be a full-time caregiver.
I had choices. Being home to keep Candace safe all the time would be better than having a stranger come into our home to take care of her periodically. I would get to be there in case of an emergency. There was no way I was going to put her in a facility either. I felt, if I really and truly loved my family, I would do anything for them. And I wanted to show my unconditional love to my wife, and fulfill my vows to her, and love her in sickness and in health. So I gave up my 40-hour-a-week job and became her caregiver full time.
A HARD TRANSITION TO FULL-TIME CAREGIVER
My transition from working full-time in an office environment to becoming a caregiver was probably one of the hardest things I have ever done. Even harder than when I went through basic training and served for 4 years in the Navy. I had so much anxiety. Between Candace our two kids and the dog, it was a lot to manage for one person. I remember breaking down in front of Candace, and I also remember breaking down when nobody was around. Praying so hard for God to help me make it through that very difficult time. Being a full time caregiver was mentally, physically, emotionally, and spiritually exhausting, and I suffered from anxiety even before I became her caregiver.
Lucky for me I am a quick learner. Candace did all the cooking (and man, can that woman cook) while cleaning was my responsibility. I absolutely loved eating the things she made. I took over once she couldn’t do it anymore but I miss her cooking. Mine just isn’t the same. But she gave me her recipes and gave me some on-the-job training starting when we first moved in together. I don’t know what I would have done if she didn’t do that for me. Probably starve.
Kids have lots of needs: school, doctor’s appointments, etc. It’s not like I didn’t want to take care of them, I just never thought I would be doing it all on my own. Sometimes I feel like a single mother.
When I married Candace, I went from no kids to two, instantly. There are times I have had to do things with the kids on my own because Candace couldn’t get out of bed. School functions, doctor’s appointments, making sure I cooked food for everyone to eat. We used to be able to tag-team these things. The kid’s dad travels for work usually, and he only has them on the weekends, and sometimes not the full weekend. So usually I am on my own though Candace helps with decision-making.
A LOT TO LEARN
I have officially been Candace’s full-time caregiver since February 4, 2019. At the time I started I knew NOTHING about anything medical. I don’t have a medical background; my background is business. I know how to do CPR, but I am not a paramedic or EMT.
Candace has taught me about Myasthenia Gravis, Lupus, Stiff Person’s Syndrome, Mast Cell Activation Syndrome (MCAS), and Hereditary Angioedema (HAE), which are her most life-threatening diseases. She also deals with issues with her autonomic system (blood pressure, heart rate). Sometimes I receive comments from doctors and nurses about my knowledge of Candace’s medical needs, and how helpful I am, especially when she was in ICU. I give all the credit to Candace, who taught me what I know.
We have also learned a lot from doctors and our own research. It’s hard but we do our best. Our goal is to enjoy life again and do the things we love to do. We want to go hiking, to travel, to do things with our kids when they are not in school – we want to live life as a normal, LGBTQ couple.
THE GRIND OF CARING FOR MULTIPLE DISEASES
All my wife’s doctors have said that they haven’t seen any patients “like her.” She has so many rare and unique health issues. Candace takes so many medications, and goes through so many treatments, and more are being added all the time. There was a point in this last year that we thought she was going to get a bone marrow transplant. The doctor decided not to go forward with it because there is no real protocol for someone with more than one auto-immune disease. If she had only one, it would be a no-brainer.
All we can do is take things day by day. Sometimes our days are filled with multiple doctor’s appointments, many hours on the road (one way), or whole days are taken for treatment. We have only been married a year, but we have been through so much more than anyone who has been married for at least ten!
IT’S NOT FOREVER
Despite the challenges, I have no regrets. We are a great team and we can get through anything together. Our mantra is “It’s only for right now, it’s not forever.” We hold onto that to make it through the tougher days. Someday, I am hoping we can do the things we once did as a couple, and as a family.
Kristine Hutchinson is a full-time caregiver for her wife Candace. Candace has many life-threatening auto immune diseases including: Myasthenia Gravis, Lupus, Stiff Person’s Syndrome, Mast Cell Activation Syndrome (MCAS), and Hereditary Angioedema (HAE). She also deals with issues with her autonomic system (blood pressure, heart rate). Kristine lives with her wife Candace and her two stepchildren Raevyn and Ben in Eaton, Colorado. Kristine is also a Navy Veteran, and did 4 years of service. After the military, she got a bachelor’s degree in Business Management. Presently, Kristine offers writing services in her spare time and has started a blog sharing things from a caregiver’s perspective.